Dad Update 14th May 2012

Dad is home from hospital. He was eager to leave, and was visibly stronger than when he went in, although no where near his former strength.

He now has to take an anti-seizure med, for the time being, but the Doctor said it can harm his liver, which is already compromised, so this may be stopped later.

Dad was tired when he got home, saying he hadn't slept well at the hospital, with all the constant interruptions and noises. He slept quite soundly this afternoon. When he woke, he sat outside on the porch for a while with PussPuss, and just relaxed.

He has asked about maybe increasing his food, and we increased the speed at which the food is fed, to free him up from being hooked so long to the machine. He is tolerating the food well. He even asked for some water to rinse his mouth, and said he swallowed some, with no adverse effects.

The nurse had told me he was to have the anti-seizure med at 5 pm, but that would be when he is still having his food. According to the printout from the pharmacy this med is supposed to be separated from the food, so no food for one hour before and after the med. I gave him the med at 6 pm, which would be one hour after he finished his second meal.

Dad seems to be focusing on getting stronger and healthier. He wants to get out on the garden tractor and do the lawn. Not sure he will ever do that again, but it's good to see him looking forward. Not an easy task when all the healthcare people are asking him about DNRs and palliative care.

I know we need to get palliative doctors on "the team" but I don't want Dad focusing on the end of his life. I am just too tired at the moment to argue with any of them. They can stay away. Dad doesn't need their negative energy. He is obviously still wanting to choose life.

I rang the brachy doctor and left a message about Dad being in hospital and that we should reschedule this Wednesday's brachy treatment until Dad is stronger. I don't want him back in hospital after the treatment.

Also, Dad asked for a list of his feed and meds daily schedule so he can keep track and maybe take a more active role in his feeding and meds. That is a good sign as well.

With all the good signs, why am I feeling so blue?

Dad Update 12th April 2012

Went to visit Dad at hospital today. He is looking stronger, but watching him walk slowly down the hallway with a cane I noted once again how much weight he has lost with this illness. He was maintaining his weight for most of the initial cancer treatment but when the tumour blocked the esophagus, and he couldn't get food or water down back in October, his weight started to drop. If they had put him on a G tube back then he could have maintained a fair amount of his weight and not gotten so weak.

Of course there were no doctors available to talk to, but Dad said the doctor suspects the seizure was the result of one of the drugs administered to him during the laser treatment. The doctor has been in contact with Dr. Morgan who did the laser treatment, so I am hoping they will avoid this drug next time. Not sure when that will be as I have yet to hear from Dr. Morgan's office what with Dad being in hospital.

Spoke to his nurse who said they are keeping him on an anti-seizure med while he's in hospital. She isn't sure if he will be continuing this drug at home. She also said he is still on antibiotics until he goes home. Again, she isn't sure if he will be given any antibiotics at home. His WBC went down to 19 then back up to 20 so they have no idea why. It could be simply cancer-related, which to me means they don't have a clue and don't know where else to look.

She had talked to dad about a DNR order. I was not happy about this, as I have been asking people to avoid the 'end of life' bs that they feel is so important to discuss with someone who is struggling to maintain a positive look forward. What part of 'don't do it' didn't they understand? Dad said to them he didn't want to be kept alive on machines, so I guess that's all they needed to hear. I am hoping Dad, in his usual way of just focusing on the next step forward, will just put this on the back burner now and focus on getting well. He did ask about exercising on the stationary bicycle, to gain some muscle strength. He is focusing on gaining his strength back, and even asked about increasing the number of cans of food he takes in!

Brother mentioned the possible use of external radiation and his reticence about using that. The nurse said that external radiation may really slow the tumour growth down significantly and seemed to feel that was a positive step to consider.

For now, it is important for Dad to gain his strength so he can continue this fight. This will be the focus when he comes home, probably on Monday.

I am grateful he's feeling better, and wanting to take steps to get stronger. It means he isn't giving up.

Dad Update 11th May 2012

The scans on Dad's head show NO tumours, NO cancer. His WBC is still up, so infection somewhere. Doctor says she really hasn't any idea why he had the seizure.

He is doing better. Walked stairs today, and is getting out of bed on his own. Will be in hospital for the weekend anyway. He wants to come home already. He wasn't slurring his words as much either.

He isn't cured from Cancer... still has the tumour in his esophagus, and the lesions on his liver. He has a long road ahead.

No news is good news???

Dad Update 9th May 2012

Talked to Dad on the phone. They've done another head scan. No one knows yet why he had the seizure. He is weak, can't even situate himself in bed without help, can barely walk, and no one knows why. He sounded very tired on the phone, and was kind of slurring his words. Am getting more worried. Will go to hospital tomorrow, hopefully, if this horse will get off my chest and let me breathe.

Dad Update 8th May 2012

Dad said Sunday he was feeling a bit weaker than he had the day before. We thought it was because he'd been staying up longer, and maybe overdoing things.

Monday he went for his laser treatment, which required fasting from midnight before, and sedation. He got home and was becoming unsteady on his feet. He went to bed and said he was feeling weaker. By 10 pm he could barely stand up without his muscles shaking.

I called the home care, and waited an hour before hearing from them. The nurse asked about his blood sugar, thinking it was low. It was 19.5. She said maybe we should call an ambulance and take him to hospital. So much for help.

I rang for the ambulance, and when they came they checked Dad's heart, but their machine wouldn't record properly. They got dad on a chair to take him outside and dad was shaking so badly he could barely sit on the chair. They got him outside and lifted him onto the stretcher, and Dad was shaking badly. Then he seemed to turn over to his side and then had a seizure that lasted a good minute or more.

It was horrible watching my dad, with his mouth open, unable to speak and I couldn't even tell if he could take a breath. They got him into the truck and gave him meds right away. The seizure ended and they rushed him to hospital.

The doctor ordered a CT scan, and has put him on IV antibiotics. Dad is awake, and the doctor has ordered more tests. I didn't go to the hospital last night because I am coming down, again, with a chest cold. Will be going in today.

Will post more when I know more.

UPDATE:

Dad will be in hospital for a few days. They don't know why he had a seizure, but are giving him anti-seizure meds. His WBC was 20, and that is high. His RBC was 101 and that is great! So we have no idea why he started to feel weaker on Sunday, and eventually had the seizure. Not much else to tell. He is stable, in relatively good spirits, still sleeps a fair bit but that's understandable. He said he doesn't want to live if he's going to shake uncontrollably like he was doing.

Oh, and today is his mum's 98th birthday.

It's been a long day.

**********

A strange thing happened at the hospital. The doctor on duty, a lady from Africa I think, was my Dad's doctor, and responsible for getting tests and finding answers today. She came by to share with us the information she had so far. Then she reached for my Dad's hand, grasped it, and when she let it go, she reached over to his forehead, and made the sign of the cross. She looked at him and said something about when you have cancer you take it one step at a time. Dad didn't know what she had done, but he really seems to like her. I plan on sending her a note, thanking her for that small act of faith. I was very moved.

 

Dad Update 7th May 2012

Dad went to Hamilton for laser treatment this morning. He woke today feeling weaker than he had a couple of days ago. That has me worried.

The doctor stretched the esophagus first, by inserting a probe. He said the opening was very narrow but he got a standard sized probe into the tumour. He said he saw necrotic tissue, showing that the brachytheraphy had burned the area. The laser was inserted into the esophagus and it burned the hole larger. He said that Dad could even have another laser treatment to enlarge the area and kill more of the tumour.

Problem is, Dad came home and is completely exhausted. I know it's the sedation, but he is worried that his RBC is down again.

Also Dad hasn't had any feeding today yet. The treatment creates a lot of gases in the stomach so Dad was told to eat only a little. I will set up a feeding shortly, but Dad won't have his full six cans of food today.

I felt at a complete loss, so called his case worker. Waiting to hear from her, to see what we can do.

Dad Update 6th May 2012

Dad has been doing better lately although he still tires easily. He decided he didn't want the special mattress pad for the chair and the bed because he wasn't comfortable. He has been finding ways of laying in the hospital bed that better support him. He also is showing more strength as I watched him reposition himself in bed. A couple of weeks ago he barely had the strength to sit up by himself.

The feeds are going well. He's up to the expected six cans a day, via the G tube. He gets three meals a day, two cans a meal, with 180 ml pre and post flushes of water. He also gets his meds via G tube, with 30 ml pre and post flushes of water.

Dad has been managing to climb the stairs to the bathroom the last couple of days, and he's even gone out to the barn once or twice. I know he's feeling stronger, and that is a relief. Whether this lasts, or improves, remains to be seen.

He rang his mum this afternoon. She will be 98 years old this month and has been in and out of hospital the last couple of weeks. She lives on her own, in her own house but right now she is in a nursing home, until she stabilizes and hopefully my aunt will move her back to her house and arrange full homecare for her. Dad said she's not happy in the nursing home, so we think she should be in her own home again. The doctors can arrange for 24 hour nursing for her, so she would be much more comfortable by being home.

Tomorrow Dad goes to Hamilton for laser treatment. We don't actually know what that entails, whether it will be painful, or what the outcome will be, but we are trying to stay positive. Dad said he's been dreaming about it, and a bit worried. He wants to get it done so he can go back to eating food, he says. Dad has always loved eating, and this not being able to eat is torture for him, so I hope they can facilitate this so he can feel normal again.

Thanks so much for your words of support, and your prayers. We have a long road ahead of us, and no one knows where it will lead. So staying positive.

Before I end this, I want to ask if you would say an extra prayer for a friend, Jennie, whose husband Roy is battling cancer again. He is a fighter but some extra positive prayers and energy his way will really help a lot. Thanks so much.

30th April Day 30

One month ago I joined a movement, Wear A Hijab in April, to commemorate the brutal murder of a Muslim woman, Shaima Alawadi. Women around the world were committing to wear a hijab for the month of April, to walk in the footsteps of hijabistas, and to pay tribute to Shaima and all women who were victims of hate crimes. Initially it was believed that Shaima's death had been the result of a hate crime. Currently it appears that her death is now being considered domestic violence.

That her death was not a hate crime did not deter me from wanting to pay tribute to this woman, as a representative of all women who die as a result of hatred and anger. I wanted Shaima's death to stand for something positive, and maybe that would help ease the sadness for her family as they grieved.

This initiative grew in meaning over the month. It was the perfect opportunity to get to know how it felt to wear a head scarf daily, to conform to the rules of modesty that devout Muslim women follow. It was also a chance to share the information I was learning with other people and maybe break down some stereotypes, creating a more supportive network not just for hijabistas, but all women. We are sisters, and learning to appreciate one another is a positive step forward.

From a religious perspective I discovered that a hijab is meant to convey modesty, not unlike the way I was raised by my mother. In her time women wore head coverings when entering a religious building, dressed modestly (if you were a 'good' girl), and tried to live their lives honestly, in service to others, and in faith to their religious beliefs. My mother was Christian. She expected the same of me. Muslim women follow that same basic principle too.

The fact is, when you get past the rhetoric of religion, we aren't that much different in our ideologies. In my humble opinion, we need to find ways to compromise, to take into consideration the religious sensibilities of the individual, and protect those, while protecting "society". We need to be inclusive when seeking solutions that involve a person's religious beliefs and to create dialogue that allows them to be part of a workable solution for everyone.

When I first put on the hijab, I was hesitant to expose so much of my face. I had heard wearing a hijab would make women blend in together. Whilst that is probably true in a Muslim country, here in Canada it was quite the opposite, and I found myself far more exposed than I had expected. I usually hid behind my long hair, so wearing a hijab took a bit of getting used to! Each day, however, what began as a feeling of being different, soon became something of ease and comfort. I even started shopping for more scarves!

Thanks to Youtube videos I spent time learning the many ways of wrapping a head scarf. I learned that hijabistas can recognize different groups of people by the way they wrap/wear their hijabs. I also learned that, just as there are a myriad of ways to wrap a hijab to create a unique look for the hijabista, there are also equally a myriad of reasons to wear/not wear hijabs.

This was a particularly difficult month for me, personally, as I dealt with my Dad's cancer. When I first donned the hijab, my boss mentioned that she, too, had tried a hijab and found it "comforting". I couldn't quite understand that at the time, but as I went about my days with my Dad, dealing with the ups and downs of his illness, I began to feel a sense of comfort, feeling as if my hijab were angels wings that wrapped lovingly around me, sheltering me. It really was a most wonderful feeling, and one I certainly needed.

Coming from a small town in Southern Ontario, Canada, I had expected to encounter some negative comments from the locals. I was pleasantly surprised not to receive any negative reactions! It gave me a warm feeling to realize that my community would be welcoming to a Muslim family, and make them feel safe and at home.

Over the month I connected with many different people. Most noteable was the nurse at the hospital, a young Muslim woman, who smiled when she saw me sitting there, the only other hijab-wearing woman on that floor. She thought I was Muslim, but was touched upon finding out my reason for wearing this symbol of her religion. I loved that she and I could connect on this level and find common ground and mutual respect.

I received many private messages of support and gratitude for taking the time to understand and empathize with hijabistas. Some people shared links to sites they hoped would enlighten me in my journey. Whether the comments were public, as on the Facebook page One Million Hijabs for Shaima Alawadi, or in private messages, the fact that people were moved to comment and share information was so inspiring to me. I cherish each comment.

It was clear to me that women become targets of hatred towards Muslims because they wear such a prominent symbol attributed to their faith. Wearing a cross, a crucifix, or other small symbol of a religion can be easily hidden, or simply not noticed. But a hijab-wearing woman stands out in a way no Muslim man does.

Would I wear a hijab daily for the rest of my life? Probably not, because I like my hair and the freedom of being able to go 'as God made me'. That said, I would definitely wear a hijab if an occasion called for one, and would be honoured to do so. To me, wearing a hijab will always be a way of showing respect for the Muslim faith.

I will always support the choice of women to wear, or not wear, the hijab, or niqab, as they see fit. Just as someone wearing a hoodie shouldn't be labelled a criminal, someone wearing a hijab should not be labelled a terrorist. We must stop fearing the symbols, and understand the problem really is the extremists and fundamentalists who twist religion to suit their own warped views.

Over the month it has been wonderful to see the genuine, normal, girlie, friends-hanging-with-friends dialogue that came out of this. There were many moments of kindness, friendship, compassion and sharing. When you become friends, you don't hate. You protect your friends. You celebrate them! This month, I celebrated Muslim women, and it has been truly enlightening.

What began as a way to pay tribute to a woman's tragic death has become a renewed desire for dialogue on many issues: hate crimes, honour killing, domestic violence towards women, freedom of choice. Women are sharing their stories, learning about each other, educating one another, and becoming friends in the process. I look forward to continuing the dialogue, the sharing, and making wonderful new friends.

Final photo: me, at work, in my lovely beaded scarf. Saved the best for last!

 

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